Every Heart Has a Voice

Julian Maha cried in the car returning from Vanderbilt University Hospital. His wife, Michele, had never seen him cry before. He didn’t cry a little cry—he wept like a baby.

The couple had just learned that their 4-year-old son, Abram, was autistic.

Michele remembers hearing the word autistic from the doctor; she says that everything after that was just noise.

Abram was an affectionate baby and toddler. He loved playing with his parents and was meeting all his developmental milestones. When he was 15 months old, something changed. Over time, he became withdrawn and eventually stopped speaking entirely. Julian and Michele, both doctors, knew something was off. Each time a milestone was lost, there was an explanation—illness, bullying at school, being in a multilingual family, and so forth. However, autism was never on their radar. Eventually, a trip to Vanderbilt lead to the diagnosis: classical autism, a term previously used to describe lower functioning children on the autism spectrum. “My mind went into shock. I heard things like ‘Abram will be dependent on care for the rest of his life.’ We got home, and it was hard,” Michele says. “As parents, you have ideas and projections of what your child is like and what he will grow up to be. All that was shattered. We plunged into the world of autism, pursuing every single possible avenue to find what was available to Abram. We felt like we were constantly going down the rabbit hole. Abram received intensive Applied Behavioral Analysis (ABA), speech and occupational therapies, averaging more than 50 hours of instruction per week, in addition to his time at school. We had the constant fear of not doing enough ‘early interventions’ and that the clock was ticking. We did everything we could possibly do.”

Michele has determination in her voice. She comes across as a strong woman who had one goal: To help her child. “As a mother, my focus was to get him better. There was no room for ‘poor me,’” she says. “When I hit the pillow at night, complete exhaustion would try to overwhelm me, but one thought kept reviving me: What can I do for Abram?” The Mahas worked with the school system and the community to get their son accepted. Along the way, they met many other families with similar challenges: isolation from friends, inability to go out, inability to join community events, and difficulty in finding babysitters. “It was August 15 of 2013; I remember that evening vividly,” says Julian. “Michele and I were reflecting on our experiences. We are two doctors with resources, and it was still hard to find him the right support and therapy. What about families who aren’t in the medical field? What needs to change? We realized that there was plenty of attention given to research and search for a cure. While that is great and very much needed, no one was paying attention to the culture around autism. The culture has to change—we have to change how society accepts autism.”

The Maha family

KultureCity was born that night out of the couple’s determination to provide a life free of discrimination and equal in opportunities for their child. The nonprofit’s mission is to create a world where individuals with autism and their families are accepted and treated equally. They have garnered national and international attentions with celebrities like Tiki Barber and M.L Carr on their board. Julian and Michele Maha have a never-ending quest to increase understanding and acceptance of autism. “We just want individuals with autism to be accepted, instead of shunned,” says Julian. “We have accomplished many milestones, but the biggest achievement is when we see our friends and community members who have no personal link to autism rise up and be passionate about this work. We want people to take a stand with us to change the culture of autism in our society.”

Michele has a soft place in her heart for autism moms: “When you are dealing with the child day in and day out, including self-inflicted behaviors and aggression, it can be overwhelming,” she explains. “KultureCity creates a ripple affect when families step out of their own world and help other families. Our people are empowered.”

One of the innovations KultureCity is leading is in creating sensory-friendly events, which are held at locations such as the Birmingham Zoo, Regions Park, and the Alys Stephens Performing Center. These events cater to special-needs children with noise-canceling headphones, fidget toys, weighted-lap pads, and other items that make the visit more enjoyable. “What KultureCity is doing for the autism world is similar to what Annie Sullivan did for Helen Keller. Where would the blind world be if it wasn’t for her tenacity?” Julian asks.

KultureCity won the Community Cause of the Year in 2015, as well as the 2014/2015 Best National Nonprofit by Guide Star, a nonprofit watchdog. It was also the best-reviewed special needs nonprofit in the country last year. On August 14, KultureCity will have its Second Annual Gala hosted by football coach Bobby Bowden at the Sheraton. Kulturecity.org includes the details for the event.

KultureCity

KultureCity is a transformative movement to ensure a better future for children with autism. The nonprofit organization shares the belief that all children should be accepted and treated equally, and that the future of these children should not be limited by their medical diagnoses. It is a hope that these children attain the brightest future imaginable. KultureCity achieves this by creating a strong sense of community and a bond between the donor and the receiver, thus ensuring both are equal partners. This achievement has led KultureCity to become not only the best reviewed special needs nonprofit in the United States, but also the fastest growing. To find about how you can donate to KultureCity, visit kulturecity.org.

Latest Project: LIFEBOKS

One in 68 children in the United States has autism. Fifty percent of these children are prone to wandering. Drowning fatalities following wandering incidents remain a leading cause of death among those with autism. LifeBOKS is a toolkit given to autism families in need to educate and share simple tools that may assist them in preventing wandering-related emergencies. Each lifeBOKS contains educational materials, a bluetooth bracelet, a QR code, a QR code shoe tag, and wireless door and window alarms. To save a life and give a BOKS, go to kulturecity.org/lifeboks.

Renee Plata working with Abram at Puzzle Piece

Q&A with Renee Plata

from Puzzle Piece, a pediatric outpatient clinic for children with special needs

Q: How has having a child with autism affected your life?

A: My child has led a path for me to completely change how I live. She has been a gift that has opened my eyes to look at the world in a different way. Actually, she is a gift to the world. To have a child with autism is hard. You change how you view the world in a positive way. It changes your concept of what is important in life—family.

Q: What is the goal of a place like Puzzle Piece?

A: To ensure a supportive and accepting environment for children with special needs.

Q: How has KultureCity helped?

A: KultureCity is doing something that has not been done before: Motivating others to accept autism and to think autistic people are valuable and not unfortunate poor things. To believe they can be the real essence of life. To know they can love and give. To value them as human beings. To love them.

Q: What should people who come across an autistic child do?

A: When you interact with a child with autism, you need to embrace the whole child and the whole family. You need to look at their strength and how to help that child be accepted by the community and see how they can be valued.

Q: What is the hardest part about having a child with autism?

A: You’re afraid that you will die before them and want to know deep down they will be OK.

Dr. Mitchell Cohen

Q&A with Dr. Mitchell B. Cohen

Katharine Reynolds Ireland Professor

Chair, Department of Pediatrics

University of Alabama at Birmingham

Physician-in-Chief, Children’s of Alabama

Q: How is Children’s Hospital helping in the care of people with autism?

A: We are creating a new Division of Developmental Pediatrics in order to embark on a significant expansion of autism care and research in the Department of Pediatrics and Children’s of Alabama. This new division will include and build on the existent resources in the Sparks-Civitan Clinics for Developmental and Learning Disorders at UAB. These clinics will soon join the new efforts in Pediatrics to put diagnosis and medical treatment of autism for children and families in Alabama as a first priority. We are keen to expand our capacity for providing medical management of autism, to discover the genetic causes of autism, and to use the current medical therapies to their maximum benefit. We are also developing new medical and behavioral therapies for children and families with autism so that the best care and outcomes in the country are available here.

Q: What types of research are you performing?

A: We are committed to building research teams with scientists across UAB and the HudsonAlpha Center for Genomic Medicine to perform wide-scale genetic sequencing aimed at discovering genes responsible for autism and neurodevelopmental disorders. We will build a program to educate researchers and physicians so they can incorporate genomic information in their day-to-day research and patient care. These clinical and research programs will open training opportunities for students and medical trainees to make new discoveries in the future. Toward this end, we are recruiting new faculty and fundraising to create the new Division of Developmental Pediatrics and a UAB Neurodevelopmental Center.

Q: What resources are available for families with autistic children in Birmingham?

A: We hope to partner with established organizations such as Glenwood, Mitchell’s Place, and KultureCity to serve the children and families with autism and neurodevelopmental disorders in our community. These organizations play a vital role in our community. One of our roles will be to make the medical diagnosis and identify other conditions that cause symptoms similar to autism or that co-exist with autism, such as Fragile X syndrome, tuberous sclerosis, epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder. We don’t know what causes autism, but it is likely that both genetics and environment play a role. We need to learn more. We will work to find the cause(s) of autism as a step toward finding treatments that improve the lives of children and families with neurodevelopmental disorders today and tomorrow.

Posted on Tuesday, June 2nd, 2015.

41 Responses to “Every Heart Has a Voice”

Way to go, Michele & Julian! Way to go, dear ones. Thank you so much for bringing your special light to the issues surrounding families living with Autism and similar similar disorders. Your passion, fierce determination and tireless commitment inspire me more than you will ever know.

Thank you for this article. I am a volunteer with KultureCity and have been working with the Maha’s
since February of 2014. I have met, seen and experience the impact KultureCity has made since it was introduced to Birmingham. I can witness for these two doctors that they are involved with the families KultureCity has serviced throughout the country. The post that are put on Facebook thanking them for their help is a testament to what is being done through KultureCity and making an impact in their families.

I too volunteer wth Kulturecity. I am also an Autism father. I was introduced to Kulturecity through Facebook Chtistmas of 2013 and have since became friends with Julian and Michelle. I share their philosophy concerning autism. I had a small autism project of my own that has blossomed under the care of Kulturecity. Kulturecity’s reach extends beyond the walls of their their home, of Alabama and all across the USA.

My son , now 12 is autistic among many other things. I thought confirmation would help but what really helps is knowing other people that are the same are out there. We do what we can to help create a normal world for our son while getting others to understand it. I’m glad that these parents are changing the way the world sees our kids!

I found Kulturecity through Facebook and to say I’m grateful is the grossest understatement I’ve ever made. I love having others that understand. People that get that my son while he does not look that different very much is different. He is not disabled he is differently abled. He can do things kids his age do and while we may do them oddly or strangly to others this is our life. Thank you for everything you have done and will continue to do because y’all have started a revolution.

In tears. Took me back to when we received our diagnosis. I love KultureCity for everything they do for the autism community. We need more people like this and hopefully one day we will have the acceptance we so desperately need.

What a wonderful article that opens the eyes to the lives of parents and families with a child on the spectrum. My son has bloomed over the past couple years. He isn’t cured of Autism and I don’t want him to cured of anything. We as a whole family took so much time taking him to therapy, enrolled in early childhood special ed. It took a family and it took a village. I thank Kulturecity for being that village that supports families and individuals.

Thank you KultureCity for all you do! I myself never even thought of autism until a doctor told me he needed to be tested for it a year and a half ago. I appreciate everything ya’ll do to raise awareness and to help others!!!

Loved reading this article, seeing Julian and Michelle highlighted for all they’ve done for the autism community. I’d love to see Kulturecity branch out into every state, so everyone can experience what real acceptance feels like, and have the opportunity to make a real difference.

Kulturecity has been a god send for us… they have been able to help so many of our loved ones with Autism…. It is a breath of fresh air in a world that sees so many uneducated people that has no understanding of Autism and how it really hard and difficult and rewarding it is raising a loved one with autism….

I support Kulturecity as an Autism Mum. I was introduced to them via Michael Miller and applaud the wide reach of their work. We live in Massachusetts, along way from Birmingham but I follow all their news. I love reading about their local events, but we have also been recipients of their out reach. They provided us a discounted iPad mini with WizardTalk group fundraising. Kulturecity is always publishing small quotes about hanging in there and you are not alone and that just brings a smile of remembrance. Accept the Autism and love it because that’s what make your kid so special. The issue now is to make the rest of the world see that special does not mean weird. Michelle and Julian do that everyday … remind us all that we are special!

Hi! I have found Kulture city on Facebook . I just want to say how awesome they are to give our kids such a amazing oppurtunity . I’ve grown great knowledge through Kulture city. For someone to give all their time and effort it just melts my heart for what they do for these diffrently tabled kiddos:) God bless you all!

I just want to say that having a child with Autism I know where you all are coming from. The beginning when I found out about my child have autism I felt the same way that y’all did. And I just want to thank you all for doing everything that y’all do for our children.

Thank you so much for all that you do for the autism community. You are helping show that there are so many faces to autism and so many levels to autism. Also there is no “look” to autism. You are amazing 🙂

A friend told me about Kulturecity and, I am glad she did. I am so glad that I have other to understand what we go thro daily. They have help by giving my son more of a voice thro there I pad mini fundraiser. He recived a weight blanket thro them and it helps him with sleep. Just to know that you can go there and ask a question and get all kind of of responded back to try to see if it help your child is awesome. We can’t say thank you enough to this awesome non profit organization.

Thank you for sharing your story! The more wr share our stories, hopefully, the more peopke will understand. Knowledge is power! kulturecity is amazing! I have only been following them for a few months, and seen them help so many children and their families.

This article is a story that is very near and dear to many of us autism families. You can choose to be victim’s of circumstance or create acceptance and opportunities for families in your community. Hats off to the Maha’s and everyone that has been so passionate about making KultureCity what it is today. Our family has been so fortunate to be a part of the KultureCity family and watch it grow into such a beautiful non profit that has never lost sight of why it was started to begin with. In the beginning I reached out to Autism Speaks about grants, never once a response. I do in fact receive emails daily from them asking for donations. KultureCity has given my daughter a weighted blanket, several toys. They have even sent me roses, and have given my daughter a voice with an iPad. There has been more than one occasion when I have reached out to them about a local family in need. Never once did the Maha’s or Michael Miller say, “I’ll get back to you.” The only thing I have heard from them is, “What can we do to help?” If I could clone the passion, love, and determination these fellow autism families have to help our community the world would be full of acceptance for our loved ones.

I purchased a yogibo for my ASD son for Christmas. He loves it, the way it molds itself to him and cradles him when he experiences sensory needs. He wont use blankets at night to sleep, but he will pile pillows on top of him. Having a “portable” yogibo that he could sleep with and put on his body for the weight he craves would be amazing.

What a wonderful article. My son was recently diagnosed non verb. He is only 3 years old. I was devestated taking him to all of these speech & hearing appointments. I still am new to the whole community. But I was sent to kulturecity. Their page has opened up so much for my family and myself. I was able to meet wonderful people and learn more and more about the autism community. I am beyond grateful.

As a child I was constantly helping with my little sister who had autism. As an adult, I put my life on hold to care for her. When I finally moved out (at 26) to start my own family, I felt guilty but I needed a family of my own. Now at 30, I have a 2 year old daughter who was just diagnosed with autism. There are some days where I feel like autism just wants to follow me everywhere and that life isn’t fair. Then there are other days when I feel like God must have known that I am a strong woman who works hard to help kids with autism that he decided to bless me with such a special child. This is my first time hearing about Kulturecity so I will definitely check it out. Your story is awesome. It is great seeing people out there working to try and make a difference in this world and how they see autism. It runs so strongly in my family (in girls only so far) that I hope one day someone will find the cause of it so we can try to prevent it from happening. Thank you for all you do!

I cannot say enough good things about Kulturecity. They provide emotional as well as tangible support for families of children with autism. Their network of programs and support extends far and wide providing strength in numbers as families come together to help and support one another. Acceptance that is s not always found within our own families is found within the community of Kulturecity. Together we stand strong for our children. Together we stand strong for all those with autism. I am very proud to support Kulturecity and am very excited about their newest program LifeBoks – a life saving toolkit to prevent wandering deaths.

These organizations change autism families lives. My heart is fille with pride for Kulturecity. I feel honored to be a part of this family. My son has benefited greatly from this organization. I can never thank them enough. Thank you for this article!

My family is very thankful for KultureCity. They have made a place where we feel accepted and equal to others. Thank you for your determination and commitment and for sharing your experience with others. Strength in numbers!

Thank you for the article, Kulturecity has been life changing for my son and myself as well as many families. I am understood and given the support that all parents need in this journey. Kulturecity is not about finding a cure because there is no cure for Autism, but rather looking into it to understand it and be able to bring awareness. I get the support that I do. It even get with my own family, I finally do not feel alone. All their projects have the main focus of bringing children a voice and smiles. I am forever thankful for everything the do.

Although I’m not new to the autism community, my son was diagnosed in 2004 at two and a half years, I did not know about Kulturecity until this year. I am very proud to know that there is a group of people who advocate just for our community. Thank you so much!

I found Kulturecity through FB and I have to say it is refreshing and an honor to know this lovely organization. When my son was diagnosed, it was difficult to find support and resources. It warms my heart the work that Kulturecity is doing to raise awareness for autism so children and adults like my son can matter in our society. I even love how they call the kids wizards! The name fits perfectly. The definition of a wizard is a person who has magical powers. I believe my son has magical powers to overcome all the obstacles that were in his way. It is magical to see the progress he makes. Thank you Kulturecity for what you have done and will do in the future!

I became aware of Kulturecity by the way of Toys AUcross America. I believe Julian and Michelle are making amazing strides in the autistic community. Helping people see our kids are wonderful and not a burden. You can tell they really care and want to help. I’m so glad I’ve found them and will support them for many years to come. They deserve much praise and their son is very lucky to have them. Thank you Julian and Michelle

This is such an inspiring story. My oldest has been diagnosed with ASD, and 3/4 of my other children show signs. Kulturcity has helped to change Connors life, and many other children. I am so thankful there are people like Julian and Michelle, And the others who have been there along our rocky journey. Thank you.

Wow!!! So glad I got a chance to read this.Wonderful nonprofit organization.My son earned his Ipad through one of your fundraisers.LifeBOKS is such an amazing idea! Last summer was heartbreaking with so many children depending.I am constantly making sure our deadbolt is locked.Just the thought of something happening to either of my special needs children is too much to bare sometimes.Anxiety and stress are the norm for us moms.Thank you so much for this blessing your making available to families desperate for help and information.

I am a mother of five 2 of my children are on the spectrum. During the first years of dealing with special needs I felt so alone and had no real support. It’s now been 13 years and over the last year I have had more support and finally feel like my family is not alone. KultureCity is wonderful. Thank you so much for sharing your story and your lives with us. The work you do is amazing. It’s been a pleasure being a part of your community.

My daughter was first dx at the age of 3yrs old. She’s High Functioning Autistic. MR . I can still hear her Doctor tell me the results, I broke down in every way. See It was hard enough leaving to another state because of domestic violence but it’s another thing for people to start telling me how bad of a mom i was. That my child needs to be disciplined more and spank her more. I even had my own brother and sister in law tell me that maybe her being taken away would be a good thing . This was my baby and my first i had no idea what to do. No one was listening to me until i got her in to see her pcp. He referred me to Heartsprings. May 3 rd 2008 i got the results back and then started to get the help she needed as well as being apologized by some. At that time she was non-verbal but with early intervention and all the help that Heartsprings has now given her a life outside of just her autism. It’s very hard though i have no family, everyone was scared to be around her for too long. I then met my best friend and also became pregnant with my son who was again dx May 3,2010 my best friend stood by me and my daughter through everything and we went to all : ot, pt, speech, therapy on both kiddos. It takes it’s toll on a person let me tell you. Especially when there is NO one else that will help. I think within the last 5 yrs or so we’ve only been out by ourselves maybe 3 times. Therapy helps and getting to know some people that ive come to know on FB for @ 2 years has helped as well . I’ve read and try and keep on on things like KultureCity and ToysAucross America. I know they try and do their best for many people out there .

kulturecity is a amazing org. My family was going through trouble and our non verbal 2yr old ASD child needed a iPad. After pain staking months of contacting EVERY org I can think of to find help, NONE could help me. Then I came across KULTURECITY and they welcomed me and treated me like family and introduced me to all the things they do to help real families of Autism. They helped us get a iPad. Autism Santa helped me get a iTunes card. They send out birthday presents to the kids. They are amazing. As hard as it to be a Autism parent, KULTURECITY has helped ease the load. I love them. They are angels on earth.

Very close to heart story, and amazing people that created KulturCity. I had the same experience the first time I heard Autism. Couldn’t hear anymore words from the doctors mouth, just noise. Trying to find any information to help your little one. My daughter, who is 5, has Autism. My world has changed because of her. Because of KulturCity, I was able to get an iPad for my daughter as well. She looves her ipad. Bringing other peoples stories and bringing awareness to others is an amazing thing to do. It’s scary in life not knowing if you will be able to protect them forever. Bringing awareness is the best thing for this future!!

that is just such a amazing story i hear you on that i am a grandma who is rasing my grandson got him right from birth lead to adopting him found out at age 15 months he had autism sirst shock then we took action he has been in school for 5 years now he is 7 but i would love to have ABA therapy but with double insurance they wont do it i have been schooled by some teacher i learn something new every day i to go to bed wiped out but would not change it for nothing i have to say thank you both for what you do i have received a weighted blanket from your program and just got the Bots today i am at a little more ease now you are some really awsome ppl you dont find many with hearts like you have i thank you for all you do god bless you in this journey we are taking KultureCity THANK YOU FROM THE BOTTOM OF MY HEART

Thank You to Michele & Julian for sharing their personal story, I guess in a way I see our stories as a puzzle, where each of our stories is a seperate, different piece but we all build off of one another, my children are 14 & 17- I can help others with younger children, just as I can learn, anticipate & cheer on those older than mine- seeing them move into prom, graduation, college & families . This was all born that night .

I have been a fan of KultureCity and their initiative for some time—I have never until today heard the story behind it. I love that the love for their son and the Autism Community as a whole brought about such positivity and forward thinking with KultureCity.